October 4, 2022 – Patient Worthy

SUNCT – A Rare Headache Disease

Post author:Anna Williams
Post published:October 4, 2022
Post category:Rare Disease

Imagine feeling like you have a sweat bee stuck in your eye socket that randomly stings you. The sting hurts for seconds. My left eye is red and tearing. My…

source: pixabay.com

Science Simplified: How is Animal Behavior Used in Research? Part One

Post author:Patient Worthy Contributor
Post published:October 4, 2022
Post category:Rare Disease SLC13A5 deficiency

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…

Unsplash: https://unsplash.com/photos/58Z17lnVS4U

Fundraiser Held for Boy with PCH6

Post author:Jessica Lynn
Post published:October 4, 2022
Post category:Pontocerebellar Hypoplasia

In his early stages of life, Austin (A.J.) Rose was diagnosed with an ultra-rare disease called pontocerebellar hypoplasia type 6 (PCH6). Now, at three years old, A.J. is a…

Jordan and Dr. Byrne. Photo courtesy of David Ogman

Saving Jordan Ogman: How One Family is Working Towards a TECPR2 Cure (Pt. 1)

Post author:Jessica Lynn
Post published:October 4, 2022
Post category:Rare Disease

There seems to be no limits when it comes to what a parent will do for their child. And when it came down to it, David and Stacey Ogman knew…

PublicDomainPictures / Pixabay

Dovitinib for Osteosarcoma Earns Rare Pediatric Disease Designation

Post author:Jessica Lynn
Post published:October 4, 2022
Post category:Osteosarcoma

In late September 2022, biotech company Oncoheroes Biosciences, Inc. ("Oncoheroes") shared via news release that its product dovitinib, which the company has an exclusive pediatric licensing agreement for from…